Special Report on AIDS treatment programme

The long-awaited announcement this month by the South African government that it would introduce a publicly funded national HIV/AIDS treatment plan was greeted with much celebration.

With an estimated five-million HIV-positive people, South Africa's treatment programme will be the world's largest. But while activists have lobbied long and hard for the rollout of a comprehensive HIV/AIDS initiative, health care professionals warn that significant challenges remain over its implementation.

The total cost of providing the drugs to everybody needing them will be between US $1 billion and $1.09 billion by 2005, according to the findings of a joint health and treasury task team. Their report, on the costing of a national treatment plan, led to the cabinet's decision on 8 August to go ahead with the programme.

The task team estimated that 1.7 million lives could be saved by 2010 if antiretroviral (ARV) drugs were given to everyone needing them. Up to 1.8 million more children would be orphaned by 2010 if ARVs were not provided. This number would be reduced by 860,000 if there was 100 percent drug coverage, and by 350,000 if there was 50 percent coverage, the report found.

An ARV rollout on the scale envisaged for South Africa has implications in terms of both the expectations of HIV-positive people, and the impact on the health care system and health professionals who will administer the programme.

The story of Mavis Mnisi is hidden away in the raw figures of HIV infection. She had come to the Helen Josephs HIV/AIDS Clinic in Johannesburg last week to seek treatment for the rash and sores around her mouth. A former domestic worker, she was diagnosed as HIV-positive early last year and her employer promised to pay for her ARV medication.

"I started taking the tablets and my boss was paying, but then she said it was too much for her. Now I don't have a job and I don't have the tablets because they are too expensive," she told IRIN.

Mnisi heard about the imminent rollout of the government's treatment programme on the radio. "I went to the clinic and I asked when I could start taking them, but they said it was still too early, the government was not ready."

Since she was dismissed from her job, Mnisi has been unemployed and is living with relatives, but is planning to move back to her home in a rural village in the North West province.

With a CD4 cell (cells that orchestrate the body's immune response) count of less than 200 - one of the criteria for ARV treatment - Mnisi has frequently been ill and is too weak to work.

"I can't afford to live here [in Johannesburg] and I can't wait here until they are ready," she said.

Mnisi is not alone. According to Sister Sue Roberts, head nurse at the clinic, more than half the patients diagnosed as HIV positive should be on treatment but are unable to buy the drugs themselves.

"We currently have about 100 patients on treatment, and this is paid for employers or family members who club together," Roberts told IRIN.

The rest of the patients eligible for ARVs are "eagerly" waiting for the government rollout, she said.

FALSE EXPECTATIONS

The government's task team had warned against "creating false expectations" over an imminent ARV programme. But that is what the staff at the Helen Joseph clinic have had to deal with since the cabinet announcement was made.

"People are so desperate, they just want to take the drugs. They don't care about the information we try to give them. Now we have had to tell people to be patient, and that this is not going to happen overnight," a counsellor at the clinic said. "But it's difficult to tell this to people who have lost hope and think this is the answer to their prayers."

Educating people about treatment was the only way to counter these expectations, Sipho Mthati, treatment literacy coordinator for the AIDS lobby group, Treatment Action Campaign (TAC), commented.

"There's no way around it, we have to have treatment literacy," she said. TAC has been running a treatment literacy campaign focused on providing information on HIV/AIDS, the treatment of opportunistic infections and an understanding of ARVs in most of the provinces across the country, and hopes the government will replicate their efforts when preparing to implement their own programme.

Although Mnisi admitted that ARVs were not a cure for HIV/AIDS, she knew they would make her "feel better" and enable her to start looking for a job and help her relatives.

The Helen Josephs HIV/AIDS Clinic recently embarked on a wellness course for 1,000 patients, teaching them how to live positively with HIV/AIDS before starting ARVs.

"We are definitely going to see a demand once they [ARVs] are rolled out. People are becoming more literate about treatment, they come in and want access to our services," Sister Roberts observed.

IMPACT ON HEALTH-CARE STAFF

Strengthening the quality of care and training health care providers was another recommendation in the task team report.

"All this talk about support and training for staff ... we don't have time to get training. The [staff] shortages have to be addressed first," Roberts said. The clinic has three staff members and is supported by volunteer staff. "We wouldn't be able to function without them," she added.

"The clinic already has a massive [work] load, it would be great to have patients who don't require hospitalisation because they are on treatment. We all feel so happy when someone manages to get on the medication. It gives us [nursing staff] hope," she said.

Roberts acknowledged that the treatment plan would demand "a lot of extra work" from nursing staff, but this was not an insurmountable obstacle.

"We will just have to make more use of the volunteers - we have no shortage of those. The most important implication for staff is the time spent keeping accurate records of how people are coping on the drugs," she noted.

According to Roberts, the main challenge will be providing a "guaranteed" supply of medicines - not just ARVs, but medication to treat opportunistic infections as well. "We already have a problem with supply - running out of these drugs will be senseless, if not dangerous."

The health and treasury departments also called for a "fast-track process" of negotiation with suppliers to facilitate better access to ARVs. Senior health department officials are currently preparing a "detailed" operational plan for distributing the drugs.

Meanwhile, hospital ward staff are in no doubt about how the universal provision of anti-AIDS drugs will benefit them. "When you see people dying - people in your age group, your brothers and sisters, you will obviously have a negative attitude. If there's nothing you can do for these people, how can you cope? But if there's something you can do, at least you will be empowered to work with patients," Roberts commented.

COUNSELLING AND TESTING

Makie Kunene, an HIV/AIDS counsellor at the Esselen Street clinic in downtown Johannesburg, does not see the rollout of the treatment plan as "an instant success story".

According to Kunene, an immediate challenge for counsellors will be turning away HIV-positive patients. "There are about five million people living with HIV/AIDS [in South Africa]. What are we going to do when everyone starts rushing to clinics asking for the drugs?" she asked.

The "main thrust" of the drug programme should be the expansion of voluntary testing and counselling (VCT) services. Up to 1,000 people are tested at the clinic every month. "People are utilising VCT, a lot of people want to know where they stand," she noted.

But counsellors would require additional training. The clinic currently offers basic 15-day training courses for "mostly lay people and health workers".

"We briefly touch on issues around treatment and the management of ARVs - we will have to intensify this part of the course," Kunene added.

The programme's success would hinge on overcoming stigma and discrimination. "People who work in town prefer to come here and not [to go] to their local clinics. They still don't want people at home to know they're accessing these services," she said.

Despite all these challenges, Kunene welcomed the move. "We used to encourage people to come forward for testing, but we had nothing to offer them when they were [HIV] positive. Informing people about a treatment option, which is available when they reach a certain stage in the illness, will make a difference."

Emmanuel Banda is a 22-year-old student volunteer counsellor who has been training at the Helen Josephs clinic since May 2003. When asked how this would change his life, he said: "It's going to be exciting ... the drugs will help patients help themselves."

Mavis Mnisi is determined to return to Johannesburg when the drugs are eventually administered in public hospitals and clinics - this time, hopefully, she will continue her treatment without any interruptions.

"We've seen how well people do on treatment. We've seen them getting back to work. They become empowered and they will now be able to get better, with or without assistance from relatives and employers," Sister Roberts said.

TAC - who was involved in a bitter standoff with the government over its delay in providing drugs - remains "cautiously optimistic".

"We need to see financial commitment from the government in the next two months, clinics need to be identified by the end of September, so they can be given the go-ahead to rollout in the first wave," TAC spokesman Nathan Geffen told IRIN.

The group also faced a challenge of adapting their strategies to help develop the treatment programme. "It's no longer about what the government can do, but what we all can do to assist," he added.